The good moments are not being choked out. There are more smiles than pain. There is more clear vision and chattering than tears and complaints. We are here with an enormous gratitude that can only come from not knowing how far this hilltop extends. We are grateful for the hope that comes during dark times and for the blinding, nearly confusing, brightness of sunny moments.
There are many good things to share with you. Aimee's pain has now dropped to a better level than pre-surgery! There is improvement in areas we had no clue might be connected to pain. Compared to pre-surgery, she is in less pain, she is more alert and clear eyed, she is more talkative, she is having less seizures, and less central apneas. Of course, surgery wasn't in a box. Some of these improvements may be due to lack of illness, lots of rest time, new food, and a change in medications. Thankful for the positive changes however they have occured.
This past few weeks Aimee has moved from no independent lower extremity movement and none enforced on her without pain to hip wiggles (in greater measure!), small leg lifts from hip, and some kicks. Oh how happy these movements have made my heart. I can't describe how dark and difficult this past few months has been, but the reward is delightful to collect. Both follow up x-rays have been perfect. After her next check in May, we are hoping to be far enough in healing to schedule the follow up surgery.
Second very good, amazing news is that we are in the process of being approved for respite care hours. Our lovely neice, Alyssa, has been hired as Aimee's provider. Sparrow clubs has been covering her pay to provide 18 hours a week. Very soon we hope to get through the process with the state and have Alyssa paid through their funding. This means 18 hours a week off from being a caregiver. 150 hours on alert duty is much less than 168 I find. :) It has taken me some time, but we have finally reached a point where I can leave Alyssa in charge with little worry or weight on my shoulders, which means time to run errands with the boys, to clean, to cook, to be outside in less than ideal weather, to sit and talk with Ed after the boys are in bed. Most importantly, it means a more sound mind. It is good.
Aimee also started back to school last week. We are attempting to up her to 3 days at 3 hours each. It has been a bit rocky to start and exhausting for her, but... She does love it. So we push forward. 
